When I left my home one cold morning a month ago, I had no idea I will not know when I could return.
My alarm woke me at four on the morning of 25th October. I had 30minutes to get ready and 15minutes to walk to the coach station where i'll board a bus to London. I had packed just what I needed for the three days I will be away. I took one final look around, locked the door and began the cold quiet walk to what seemed like my future.
There was a gusto to my footfall as my knee high flat boots hit the pavement. Though still recovering from a surgery from only a week prior, the elation at finally getting a date for a planned procedure i've been waiting for, for months was enough to dull the soreness in my throat and the tiredness in my bones. I was ready. I had also made sure to make plans for when I returned: a two days trip to the Brecon Beacons, training and resumption of volunteering with two local charities, get on with work commitments and deadlines. This long list of to-do was on the homescreen of my computer and phone - a constant reminder of what I had to do. 'Rest' was not on the list.
I arrived on schedule and went ahead to have tests and scans done, in preparation for surgery the next day.
I woke up feeling like I always do after surgery, teeth clattering cold, groggy, sore. When the surgeon came by, I was aware enough to understand what he said, the procedure was aborted because it would've been risky to proceed. At the end of our conversation, two things were clear and some others weren't. Firstly, I would need a repeat of the surgery I had the week prior, secondly, I would need more surgeries than initially thought. The unknowns were: how long will this take? Do I have to be in hospital for the length of my treatment? Will this treatment, in whatever form it takes, be definitive?
I remember not knowing what to do about my to-do list as the implication of the conversation settled in. And, been filled with dread at the thought of cancelling appointments and not meeting deadlines. The thought of disappointing colleagues and somehow not performing because I am sicker than I previously knew filled me with dread.
The first person on my 'to reach list' was Jill, and it's no surprise, we connected on World Pulse. Jill, another World Pulse sister, Frankie and I are working on a project that would empower women and their local communities in Cameroon. If anyone would understand, it was Jill. I recall been apologetic and telling her I'd understand if she didn’t want me in on the project anymore, I'd rather extricate myself than stall things, I said. She was not only supportive of my situation, but her words jolted me back to sanity, I needed to prioritise getting well. Put simply, I need to practise selfcare. Her words and support gave me permission to be with this, this news I had just received, this terrible chaotic time in my life.
I've been working with a great therapist for a few months now. At our last session over a month ago, I talked about all the things I managed to pack into my week. We had a moment where what seemed like admiration passed between us, and, as if on cue, we both said 'but that is not self care.' And it wasn’t. I haven't been kind to my body, I went about my work after major surgeries as though I just had Botox injections, I kept pushing myself even when it was evident I needed to stop or slow down, I needed a break, my body needed to rest.
Until 2003, I only had to 'prove' myself academically and in sports, this changed in 2004 when, after several botched surgeries, I acquired a disability, one I still live with. I was a 16 year old girl living in a society that puts enormous pressure on the woman - to be well, to be strong, to be a homemaker, to be selfless, and discriminated against disabled people, even more so, disabled women. There was no room for 'weakness', for disabled women, there was no room for me.
The need to perform, to prove my weight in gold is inextricably linked to my gender, my disability and societal expectations - many of which I had internalised. Growing up in a society where disabled people excelling is the exception rather than the norm put immense pressure on me. I lost not just my voice but my identity when I acquired the disability. Medical Anthropologist, Mary Wickenden's words "If you cannot talk, it may be hard to prove that you think…" sums up most part of my experience. I needed to prove to myself and the world that I was no invalid.
And so began this never ending quest to prove myself, to prove that I could still do everything, and then some, inspite of my limitations, often to the detriment of my physical and mental health.
This need to prove was also fuelled by the desire to express gratitude to my family for seeking out the best treatments money could buy. Of course, they in no way made me feel like I owed them, but I felt I owed it to them to be a high achiever, so they'd know their 'investments' wasn’t in vain.
With hindsight, I realise that my best show of gratitude would have been to practice more selfcare, not only would I have had more good days but my health would have been better for it.
The first time my body forced me to prioritise It was early last year. I was so poorly I could barely function, still, I couldn’t stop, wouldn’t stop. This was despite the fact my work involved encouraging the rural women to not be ashamed to take a break even when they think they don’t need it or ask for help when they may be struggling, a sermon I clearly didn’t practice. When I think back to the conversation I had with the surgeon, I am amazed at how skewed my priorities were then. The thought of disappointing others due to unexpected turn of events was what I found most difficult about my situation.
It's been a month since that morning I left home, I am still in hospital, unsure of when I will be returning. I've had a lot of time to think about the early warning signs my body's been sending out for years, and I've thought about how I could have been more responsible.
I won't pretend I've got it all figured out because I don’t. But I can tell you I've listened more to my body these past weeks than I did in 14 years. As I refamiliarise myself with my body and her needs, I realise how fortunate I am that my situation is not completely bleak, though sometimes, it feels as though my body has been stretched beyond its limits and can never quite comeback. There are times I almost forget what this is about - feeling pressured to post on my website daily, keeping work hours in my hospital room because I've got my iPad and free wifi - then I remember and ask my body for forgiveness.
I've thought back to my conversation with Jill a lot. If she wasn’t as supportive, the penny may never have dropped for me. Our conversation bolstered me as I sent out emails cancelling meetings, explaining the change in my circumstances.
Slowly, am learning to build my life around my needs, prioritise my physical recovery as well as mental wellbeing, let go of the need to please, to perform, to prove myself, to be seen to achieve great feats inspite of. I am learning to say no, to keep my phone away, to not come to the phone during 'me times'. I am accepting that my presence is present enough, and that its ok not to show up too. I now know my body matters, I matter and being disabled bears no shame or guilt.
I am finally heeding the warning flight crew give before liftoff: wear your oxygen mask before attempting to help another person with theirs. In my words, I am saving myself so I may yet save the world.